Sarah Murnaghan, 10, has end-stage cystic fibrosis and is waiting for a lung transplant. Her family is petitioning for a policy change to let sick children receive adult lungs. / Change.org
(CBS News) A Philadelphia girl who successfully sued in order to be put on the adult lung transplant list is now recovering after receiving a second lung transplant.
"We're not out of the woods, but Sarah's health is trending in the right direction," her parents, Janet and Fran Murnaghan, said in a statement to CBS News on Friday.
Sarah Murnaghan, 10, underwent her first adult double-lung transplant on June 12 at the Children's Hospital of Philadelphia following her headline-making struggle to get added to the adult waiting list. Shortly after the procedure, her family deemed it a success.
Janet explained since Sarah was running out of time, the family said opted to go with the adult lungs that were available at the time. However, the girl -- who has end-stage cystic fibrosis -- suffered a primary graft failure (PGF), which happens in 10 to 25 percent of lung transplants for unknown reasons.
Sarah's PGF was caused by the poor quality of her first set of lungs, according to her mom. Janet emphasized to CBS station KYW in Philadelphia, Pa. that the necessity of a second procedure was due to a donor issue, not Sarah rejecting the lungs. Her mother said the doctor told her Sarah's decline was the fastest he's seen in 23 years.
Sarah was then put on a bypass machine known as a VA ECMO, and was given a week to live without a second transplant. The Organ Procurement and Transplantation Network (OPTN) approved Sarah to be placed on the adult transplant list again.
A second set of lungs became available, but they were infected with pneumonia. Her parents decided to go ahead with the transplant on June 15 despite the high risks. It's unclear at this time if the second donor was a juvenile or an adult.
"(There was a) 50 percent chance she would die in surgery but million to one chance she wouldn't survive the first pair of lungs," Janet told KYW.
Since then, Sarah's condition has improved. On June 21, she had another surgical procedure to close her chest, which was left open so she could heal. She was brought out of her induced coma, opened her eyes and communicated by nodding her head. Her last two chest tubes were removed on Friday.
According to organ donation rules put in place in 2005, adult organ allocation is based on severity of illness for those 12 and up. Since Sarah was under the minimum age, she would only be offered the lungs after every single person with her blood type 12 and older did not want them, even those less sick than her.
Sarah was on top of the pediatric list, but there are far fewer young donors. While there were 1,700 lungs available in 2011, and only 20 came from donors 11 and under.
Her parents started a Change.org petition asking Secretary of Health and Human Services Kathleen Sebelius to intervene and review the current organ allocation rules. They later sued on Sarah's behalf in a Philadelphia court.
A judge ordered that Sarah be put on the adult waiting list, and because of her condition, she rose to the top. Furthermore, the Organ Procurement and Transplantation Network created a special appeal and review system to hear individual cases like Sarah's. Another adolescent with end-stage cystic fibrosis, 11-year-old Javier Acosta, was also added to the adult transplant list following a lawsuit.
However, the medical community raised some concerns over allowing a young patient to be placed on the adult transplant list. Dr. Maraget Moon, an assistant professor of pediatrics at Johns Hopkins Children's Center in Baltimore, previously told CBSNews.com that adult lung transplants are far more studied than child transplants. Right now, there is a 50 percent chance that a lung transplant will fail for anyone, so some doctors feel that putting the organ in someone that has a greater chance of success might be the better option.
"It would be very difficult that this system has to respond for individual pleas for help," Moon said. "Every story is compelling. It's always tragic when someone doesn't get an organ -- that can't be a reason to change that approach," she said.
Arthur L. Caplan, director of the division of medical ethics at NYU Langone Medical Center, previously added that while the judge's decision was a "reasonable compromise," not every medical case should be decided by the courts.
"I think closer scrutiny needed to be given to exclusion of kids under 12 under from lung donors, and that was achieved. Now I think the system should be allowed to work," he said.
Sarah's case isn't over yet though. On Monday, she'll have diaphragm placation surgery to flatten the dome her of diaphragm so her lungs will be able to expand further. Currently, her diaphragm has been partially paralyzed because of lung transplant surgery, and she was unable to have her breathing tube removed earlier this week as a result.
"Her health was so precarious, and we were so physically, mentally and emotionally drained that we kept some of what was going on at the hospital private," her parents wrote. "Her care and being by her side has been our focus."
© 2013 CBS Interactive Inc. All Rights Reserved.